Tag Archives: family and chronic illness

“What would it be like if I could accept life

– accept this moment –

exactly as it is?”

– Tara Brach

“How you look at it is

pretty much how you’ll see it.”

– Rasheed Ogunlaru

“Every experience,

no matter how bad it seems,

holds within it a blessing of some kind.

The goal is to find it.”

– Buddha

“Don’t let life harden your heart.”

– Pema Chödrön

Today I searched for quotes to help me simply accept life has it is right now, and change my thought process about it all. I promised someone recently, “Don’t worry I won’t let her steal my joy”, but by the time I said that, I realize I had already allowed that to happen.

The serenity prayer states, “God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference.” My biggest problem right now is that I don’t feel I have the wisdom to know the difference. I’m spinning my wheels trying to figure out what I can change, and if I can’t change things, how can I just accept that? What blessing do I find in it? The greatest comfort I have right now is knowing that everything changes. This is just a blip in my life, it will change…..right?? Please tell me it will change. Between the stress in my personal life and the stress of politics right now, I just feel overwhelmed.

The holidays are coming up. I was really looking forward to having the holidays with family, but it is way too complicated for me. I’m ready to run away and hide for the next couple of months. Anyone want to come with?

I guess I’ll start first by apologizing for having to have Lorraine do Mindfulness Monday for me again this week (thank you Lorraine, you awesome) I have been feeling like a fraud. I have been talking about mindfulness for a few years now and I simply haven’t been able to live the life. My life seems out of control right now and I haven’t been able to accept that this is the way it will be and be okay with it. My meditation practice has never been as regular as I’d like, but lately it has been non existent. Why is it when I need this the most, I have been unable to simply let that shit go.

Living in close proximity to family has been more stressful than I thought it would be. We haven’t been able to help my father-in-law as much as we thought we would. He simply wants to keep doing as much as he can in addition to caring for his wife, so he has some semblance of normalcy. We do try to see him at least once a week, but that doesn’t seem like enough to me, and we haven’t been seeing as much of M as I thought we would. She has no idea who we are and I’m afraid that is making her a little frustrated. I’m not sure about that though. She is very pleasant to be with, she talks and talks, I just wish I could hear her better. Now that I’ve been more symptomatic, it’s hard to do much to help anyway.

My hearing loss has been much more of a challenge here than I thought it would be. Not only do I have trouble hearing M, I can barely understand anything my niece and nephew say, and my new psychiatrist…well, let’s just say, I won’t be going there without Stuart with me to help translate. She is very soft spoken and has an accent so she enunciates her words differently, it makes it extremely hard to read her lips. I wish I knew sign language so I could request an interpreter. I could request CART, but that’s really hard to set up, so it could make it very hard for me to get an appointment when needed. I also don’t understand my headache doctor, he also has an accent, he talks fast, and really has no idea how to talk with someone who has profound hearing loss. That kind of amazes me. This city has a large elderly population, that means there are more people here who have late onset hearing loss, doctors should know how to communicate with us. Oh who am I kidding, many doctors don’t know how to communicate with anyone, hearing or not.

The vertigo has gotten worse. Ironic thing, I just received a letter saying my Medicare benefits are being reviewed, right after that my vertigo started going crazy! When I finally got Medicare my symptoms started getting better, not immediately, gradually, but it was better. Was it the extreme stress of feeling like a burden, and the fear that if something happened to Stuart I wouldn’t have insurance or any income, causing my vertigo to be worse? I have no idea, all I know is that I’m having vertigo again, often, and I’m really upset about it. I’m even using my walker again, not every day, but I’m definitely getting use out of it again. I think buying a car was tempting fate, the last time I got a car I got worse….you can see how my mind is just spiraling. I’m so tired.

To top it all off, I’ve been dealing with some of the worst rage episodes I’ve had in a long time. I started taking estrogen about 2 weeks ago for menopausal symptoms, I’m thinking that could be it, but since I have Bipolar Disorder it always concerns me. I do have a call into the doctor, let’s hope we can figure this out before I kill someone.

Speaking of my mental health, my psychiatrist had gene testing done to help determine which drugs are best for me. The results are very interesting. I want to share a lot of that with you, but this post is getting long, so I’ll save that for another day. If you’d like to read more about the test I had, it’s called Genesight, here’s the link to their site. https://genesight.com/

My back has started seizing again, the muscle spasms stop me from doing a lot of the things I’d like to. Like baking!

But I was able to do a little celebrating for Halloween (after a complete meltdown on Halloween day, the night turned out pretty good.)

Here’s a few photos of my makeup, one from a festival we went to on Friday and the other for Halloween night to give out treats. Halloween night wasn’t very inventive, it was the end of a very long and emotional day, so my makeup was not what I had planned.

Friday night at the Pima County Air and Space Museum

Halloween night at home

I hope your Halloween was a hauntingly good time.

I’ve been having a hard time writing lately, I may be writing more journal type post, I think I need to get more of this stuff out.

My husband’s stepmother (M) was on her way to a basketball game when she tripped and fell face first on cement. In that instant, our lives changed forever, we just didn’t know it yet.

After the accident the only real damage evident was the loss of all her front teeth. She was recovering and was going to be fitted with a bridge, but during her follow-up with her physician to discuss other symptoms she was having, they found that she had dangerously low sodium. Low sodium can cause swelling, for the most part that’s not dangerous, but “when the cells of the brain swell, it’s much more detrimental. Because the brain cells are so tightly confined by the skull bones, even a small amount of swelling can be dangerous. This is particularly dangerous when sodium levels drop rapidly, causing brain cells to swell rapidly, Without immediate medical treatment, this rapid swelling could lead to coma and death.” (1) M was quickly admitted to the hospital, however, she was nearly comatose before they could lower her sodium levels.

The severe drop in sodium caused havoc with her body, we knew she would require physical rehabilitation. However, when her sodium levels returned to normal, it was obvious there was something still wrong.

M was having severe issues with her memory. She could read, but she couldn’t comprehend what she was reading. There was further testing, and it was found that she had a tiny subdural hematoma. (later is was determined that the hematoma was worse than initially thought) There was also talk of Alzheimer’s, as this runs in her family. (from what I understand she was having minor memory issues before the accident)

Soon it became apparent that M would need long term care. She is not expected to make a full recovery. She will be entering a long term care facility in less then 6 weeks, and her children plan to sell her house in 6 months. I’m not sure if they are selling it because the may need funds, because she is not expected to ever come home, or because it would not be a safe place if she ever did come home because as it is a split level and she has to be very careful not to fall, or a combination of the 3. She also has osteoporosis and they’ve warned if she breaks a hip or something, they can’t do anything for it and most people often die from it. (no, her children are not kicking dad out, this was decided by all involved)

M is one of the most logical people I know. She was a computer programmer for years. That’s pretty amazing since she is in her late 70’s and computers have come a long way in the last few decades. She took out a long-term care policy years ago, knowing that Alzheimer’s runs in her family; she wanted to make sure things were taken care of if she also got it later, I wish Stuart had been able to get a policy like that, the insurance will cover all of the cost of the facility, and it’s expensive. I never dreamed that a good assisted living facility would cost $6000 a month. From what I understand, this place is just wonderful. They even have dog and horse therapy.

Stuart’s father (Dad) and M got married about 7 years ago, about 7 years after Stuart’s mother passed away. (I’m really not sure about the exact time in there) He moved in with her and they have been living in her house. This is a major life change not only for M, but also for “dad”. “Dad” does own 3 houses of his own, but someone is living in 1 with the option to buy, 1 is too far out of town for him to travel to the facility M will be in, and the last one needs some repair. He plans to sell the last one within the next year. So “dad” has to find a new place to live.

We’ve been discussing quite a bit recently, before the accident, about where we’d like to make our forever home, where we’d like to eventually retire. (well, when Stuart retires, I haven’t been able to work in years) After hearing this news about M, we’ve decided to actively pursue moving to Tucson, AZ. We have family and friends there, it’s warm there year round, and housing is less expensive. We’ve discussed this briefly with dad and it sounds as if he would really like us closer. We plan look for a house that has some kind of room for a guest to live-in; a guest house or little apartment would be ideal; that way dad can live with use without feeling like he is intruding on our marriage. I’ve looked up doctors and I’m please with the possibilites. I even found a group that supports adults with hearing loss. Now, Stuart just has to find a job.

I’d love to hear your take on this topic. What do you give yourself permission to???

Today – I give myself permission to Cry.

My x-rays showed more degeneration in my neck. C5-C6
The pain is intense. It just hit me that this is only going to get worse. The pain will always be there.
My father is in the hospital. I can’t go. I can’t ever go.

Today I give myself permission to cry.

(photo taken today, I manipulated it with photoshop, but the tear is real.)

I don’t talk about my family often, other than hubby and the furry babies. But there is something on my mind, something that may explain part of sadness.

My father had liver cancer in 2013, he went through treatment (chemoembolization) and they got it. It was a much easier way to treat cancer than anything I’ve ever seen. He has been doing well since then….

Until his check up in December, well even then they didn’t think anything was seriously wrong. When he had his initial cancer he had a large tumor that they got rid of, and he had a tiny little tumor that they left alone, but they have watched. It hadn’t grown at all then at his December check up, it was an itsy bitsy bit bigger, so they decided to go in and do Radiofrequency ablation (RFA) and get rid of it. They did this the near the end of January. During that procedure the doctor found more 2 tumors.

This was supposed to be an in and out no big deal procedure, but it took my father a while to recover from it. Last Monday he had the chemoembolization again on the remaining tumors, this procedure is less hard on him. Now this coming Monday he will have RFA again on both of the tumors.

My father is 82 years old. This is really hard on him. It’s also really hard on my sister. She is taking care of him. She was taking care of him after his first surgery when I was put in the hospital for having seizures. She was so worried about me she got my uncle to come stay with my father and came to help me, then she turned around and went right back to care for my father again. For over a month now she has had no life of her own, she has only been taking care of others, and I don’t know how much longer she will have to do this. She is normally very involved in her grandchildren’s lives, I know this has to be hard on all of them.

I haven’t been able to go see my father.

I can’t help either of them.

I can’t help but think….what if…

and I can’t help but feel worried, sad, and guilty.

When you have times when you can’t help others who you love, how do you handle it?

I shouldn’t feel guilty for being sick, but at times like this, I do. Well, I feel guilty that my sister has to shoulder all of this on by herself. I feel guilty that I can’t even be there to hold my father’s hand. And I feel guilty that I felt better today than I have since I can remember.

After days of having vertigo constantly, yes I had 2 days of rotational vertigo that went on every single second, I woke up feeling amazing today.

I had a really good day…..it’s hard when I think about what my family is going through.